Monday, April 2, 2012

1st part of the Tourette's research study! :)

Hey guys! So today I did the first part of the Tourette's study that I am participating in! I drove down to the medical school campus where the neurology labs are and where I had interviewed the Tourette experts for my documentary. The woman I interviewed for the documentary who both has Tourette's and researches it was the one who did the testing and I was so glad to see her again because (once again) I think she is just awesome!

The first part of the study is the behavioral testing portion and that's the portion I did today. We went into a fairly small testing room and did the testing and cognitive part first. I did things like repeat numbers forwards and backwards, give definitions of vocab words, identify shape patterns, read off colors, and read of colors of words when a different color was written (like this: blue or red). The reading of the colors was actually hard! I kept wanting to say the word that was written instead of the color it was written in!

Then we did the second part of the behavioral testing portion which was to do pencil and paper questionnaires. I had already done a few questionnaires on gender, ethnicity, handedness, health history, medicines, and family Tourette's history. At the lab though I did questionnaires on my current and past tics, my OCD, and the premonitory urge that most people with tics feel before a tic. It was pretty easy for me to fill out the forms because i've done forms like that before a whole lot (especially the OCD forms for various therapists lol!). I wasn't ticcing that badly throughout the testing which was good! I was really focused on what I was doing. I did do some throat clearing, sniffling,  squeaking, eye tics, and facial tics though, but Dr. G didn't seemed fazed at all by them of course. She spends a lot of time with people who have tics. She did confuse one of my vocal tics with a sneeze though and said "bless you" after I ticced. This is a very very common confusion though with me, lol. Everyone always thinks i'm sneezing!

My favorite part though was getting to be with Dr. G and do the testing with her. It's amazing to be with an adult who understand tics on such a personal level and know exactly what it is like. To be able to discuss a premonitory urge with an adult like it's as normal as an itch, is something I don't get to do too often. To answer the question "have your tics caused you distress?" with "sometimes they don't bother me that much and sometimes they just get really bad and I want them to stop. Oh and also I was bullied as a kid" and have her completely 100% understand me because she went through the same thing is really unique and special for someone with Tourette's.

When I mentioned I was bullied she said with such understanding "kids can really be cruel" and when I said my parents had taken me to get CT scans of my sinus's and allergy tests to try to figure out my sniffling problem, the look on her face was one of such understanding and sympathy and "i've been there, that was me". Dr. G is truly my idol and someone I just look up to so much. I wish I could know more about her and spend more time with her. I think if we were the same age, we would have been great friends.

Well I have one more portion of the research study to do, and that's the MRI portion. I go for my MRI of my brain on Saturday at noon and Dr. G will be there! I am excited to see Dr.G again but not so excited for the MRI. Dr. G says that she will image for intervals of 5 minutes then stop so I can get all my "wiggles" out in between. You can tell this MRI screening was designed for people with Tourette's, lol.

Hopefully I will be able to get through the MRI screening without having to get up and jump and tic all over the place. I am not to confident I will be able to get through it though without having to get up and tic a bunch bunch bunch though. The last time my body was confined to a small space was when I was coxing and my coach wanted me to be a rower for one day. With my feet strapped down in the boat, Tourette's kept protesting and my feet and legs kept jerking out of the feet straps and I just NEEDED to get up. When the boat finally stopped and we got to land, I had to shake all over, hop up and down, and basically spaz out for like a solid hour. So I am hoping that the same thing will not repeat itself. Dr. G says I will fill out about 20 minutes of forms after the MRI scan so most likely she will see the worst of my Tourette's. I am so grateful she will be there though as apposed to another doctor who I don't know. I know that however it goes, Dr.G will be incredibly understanding. After all, she herself has Tourette's and knows what it's like.

Besides all this, yesterday I got to hang out with my cousins Kitty and Twitch! We had a family get together because one of my uncle's is in town from California. He brought his two young kids who I have never met before. The older boy definitely has so ADHD. Talk about a hyperactive kid! I think Twitch is having a rough time with tics though. She is back to wearing her tic medicine patch and her medical alert bracelet for TS. I haven't seen her wearing either for a while, but as most of us know, tics wax and wane. I hope her tics get better soon because its looking like she has lost a lot of weight and has more scaring from a complex skin picking tic which both of us have. She seemed to be in good spirits despite all this though and she was very nice to me and we talked a lot. I was also wearing my James Durbin necklace too! I hope she recognized it! Maybe not though because few people actually know about James Durbin even in the TS community.

I also start school again tomorrow. I've been on spring break for two weeks, and I have to say I am glad to go back to school! I have missed being with all my friends every day and I have even missed seeing my teachers! First day back after this long can prove for a trying day of tics, but maybe I will get lucky and have few tics because I am relaxed and have been on break for a while. We'll see!

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